Category Archives: Disability Related

For the record, until this December I have never said something out loud in regards to Benjamin’s health that could “jinx” it. I refuse to even celebrate his birthday early; if it falls mid-week, his party is the weekend after. One year, his mylar balloons got loose… one flew away but the number 4 got stuck in the tree and Uncle Jimmy climbed up it for me because I was so freaked out by it.

But I jinxed it this time… Mom and I looked back a couple of weeks but couldn’t find a Facebook post about it so I must have said it out loud that Ben managed to go all of 2016 without going to The Stollery Emergency Room but on Boxing Day, guess where we were!

A four day temperature is cause to bring him in to see Dr. McGonigle and when the office is closed, the emergency room we go!

They checked his ears and lungs and gtube site but nothing. It was a resident (very kind one!) and a doctor I had never met before. As they were leaving after checking him out, they gave each other the looks of “what should we do?” And “I have no idea” and told my mom and I that they were thinking about running some x-rays on his gtube in case it was dislodged or his lungs just to “make sure.” While they were very nice about it, I had a sense that they were playing a guessing game and while being helpful, had no idea where to go with Ben’s care.

After they left the room, I looked at my mom and she shrugged so I went out to the desk; I asked the doctors if they felt my son’s condition was an emergency or if he would need to be admitted to which they replied “no”. I told them that I would much rather take him home them and call his regular pediatricians office tomorrow and come in a second time, then to have them run tests unnncessarily. I also told him that I was faily certain Ben’s tube is fine on the inside; I assured him that we would bring Ben back in if his condition worsened and that we had 24hr care in place.

And the truth is, If Dr. McGonigle or Dr. Chatur want us to run a hundred tests and were just guessing, I would do so without question!!

But they know my son and I know them.

The resident stated that he understood (again, very nice about it!) and asked me to give him a few minutes.

Then I closed our room door and burst into tears. Overwhelmed. It’s so hard to make decisions about your child like that, especially when they are already so fragile. My poor baby is sick and all I wanted was to make him feel better, not worse.

I called my husband to make sure he was alright with my call… that he was okay if we left the hospital and head back in tomorrow to see our regular doctors but mid-conversation, the resident returned and told me that our doctor was actually in the hospital and that they had paged him for us.

Dr. McGonigle came a while later and checked Ben out. I explained what was going on and that Ben had not been his usual happy, easy going, playful self and that he had been lethargic and unwilling to eat. He asked how long the fever had been running; I told him four days and that’s why we came in to which he replied “that’s right then.!” (Relief on this mama’s part to hear your doctor acknowledge that you should have brought him into emerge. I always feel bad if we’re taking up space unnecessarily.)

He told us that Ben has a viral infection and will need to run its course. Hydration and Tylenol/Advil. That’s it. No testing necessary. He also checked out his gtube site and asked that I bring him in next week to have his site “fixed” and for a follow up.

And then I hugged him and kissed his cheek because there is no one in the world like him. And I would say the same about Dr. Chatur. We are so lucky and fortunate and grateful to be under their care. Even Ben cracked a little smile when Dr. McGonigle came over. Those doctors are a part of our extended family.

My Ben is still down today but did play in his jumperoo for an hour, watching PJ Masks (his new favourite!) and that is a bright sign of better things to come.

And a reminder to never say things out loud before they actually happen (or so they don’t!). Xo

Introducing Ben to new people isn’t something we do as often as we used to; we have great family connections and have surrounded ourselves by the same people for most of the past nine years.

As I transitioned into a new job this year, it has been interesting and slightly funny (for me!) to try and explain Ben’s diagnosis without it sounding as dire as it maybe is.

Ben is an anomaly; he is one of a kind. There are still only a handful of people officially diagnosed with his type of PCH and when I create that visual for a new acquaintance, I don’t think they always know how to react.

I just want to clarify – it’s not sad for us. We are no longer sad or upset by his diagnosis. We have sad moments and stressful times but we have mourned the son we thought we were going to have and now celebrate the amazing person Ben is. That ship is so far gone for us; Ben is exactly who is meant to be and we’re okay with that. So you can be too.

New people in my life have expressed sympathy over our “situation” – what situation? I appreciate your sympathy but really don’t need it (not meaning to be harsh, but this is our everyday… it’s just reality). And I definitely don’t need your pity so don’t even go there.

What I do need is for you not to judge me when I come to work with a big mess of drool on my shoulder or if I wear the same thing for five days straight because my priorities don’t often include my wardrobe.

Explaining Ben to new people actually makes me feel bad because I know how it sounds. It sounds tragic and terminal and unfortunate. I have heard myself say several times “It’s really okay” or “It’s not as bad as it sounds or looks on paper.”

I do sincerely appreciate those who express curiosity or want to know more about him; I’m happy to answer your questions and share his life with anyone who wants to be a part of it. I can talk about Ben for hours if you want.

For some people, I believe that it is difficult to imagine that kids like him exist. But he does. And there are other kids with rare conditions whose stories are similar; some of those stories are happy ones and some are sadder or shorter. We are the lucky ones…

We are lucky to have a very happy, mostly easy going child, who considering the adversity and challenges he faces daily, soars through his life smiling and laughing and smiling and laughing… and sometimes biting.

It is easier to keep people updated on the life of Ben through Facebook but while it is nice to see who reads it and the likes and comments, I feel it doesn’t have the same sharing power as when I sit down and write it out on WordPress. I will make sure that Being Benjamin’s Blogs show up on his page so that everyone who wants to read about him can including those who had previously subscribed here.

As we’re sitting in Kindergarten Information Night and the teacher is talking the group through what to expect over the year for our children, special needs children comes up in the conversation.

A parent, near the back of the room asks “special needs kids in the classroom? what do you think about that?” The teacher looked surprised at the question (instantly winning points with me) and answers something along the lines of “it’s fine” and “a past child with Cerebral Palsy did quite well” BUT my defenses were already up.

First of all…. children with disabilities are not “special needs kids” – they are kids that require extra support and attention; all our kids are special and their needs are unique to them. I prefer “Child/Parent Led Education” or “Inclusive Education”. I understand that the term special needs is widely used and accepted but when it comes to education, I feel like it immediately isolates children into categories.

What does get my defenses up is the tone of which the question was asked “about that?”

ABOUT WHAT? About a child with equal entitlement to an education? To a child capable of achieving goals and meeting challenges in their own way (no different than any other typical kid)? About an inclusive community and educational system? Inclusion benefits everyone, especially at the Kindergarten age. It provides the opportunity to learn about acceptance, and kindness, and understanding differences.

I wanted to shout it out and inform each parent there what the benefits of an inclusive classroom can provide but…… my husband put his arm out. Stopped me from finding out exactly which mom asked the question in that tone and suggested that maybe she didn’t mean it the way it came out. She did mean it that way but I understood what he was saying. I don’t have to pick every battle. I didn’t need to fight this battle, especially considering we were there for Poppy, not Ben.

The thing is… parents of children with disabilities have to fight for everything. It becomes instinct and second nature and speeches no longer need to be prepared because you have your advocacy points memorized. I feel like a huge part of my job as Ben’s parent is to educate and be the voice that he doesn’t have; I say this all the time but not everyone is going to want to hear what I have to say and I have to consider place and time.

So while I kept my mouth shut this time (but admittedly, had to excuse myself from the room to take deep breath), rest assured that come September, I will find a way for Poppy and I to show her classmates how important inclusion is and what it means for her to have a big brother with “special needs”.

2015 was pretty awesome for Ben. I have written this blog post a few times over the past weeks but was scared to hit “publish” as I didn’t want to jinx it before the new year hit.

Best news from last year? NOT A SINGLE HOSPITAL STAY. Not one. Not for observation, not for a procedure, not for an emergency. NOTHING. Ben wasn’t even admitted to emerg. at ALL last year. That may sound ludicrous… pointing out something like this but when you’ve spent weeks at the hospital and left with so many times with unanswered questions… when the condition your son has such little documentation and information… something like this is UNBELIEVABLE.

I’ve said it before, I will say this over and over.. we are are so grateful for Ben’s doctors (McGonigle & Chatur), his specialists and for his overnight nurses. Their teams, along with my mom, Ben’s sisters, his three other grandparents, aunts and uncles truly make such a difference in his and our life. I will never be a parent that says we “struggle” with his condition because our support system is so incredible. THANK YOU SO MUCH, all of you!

Fingers crossed for another year of health and happiness! Here’s to Year 8!

I find it very frustrating as a parent of a special needs child when parents refuse to accept more. When labels, pre-conceived ideas or even history negatively impact pushing the “limits” of our children. I personally believe that by allowing these ideas of what our children can only be, that we’re deciding just how much of a person they get to be.

Why do we not constantly lift barriers by encouraging people to overcome their diagnosis? Or work within their abilities to be more than just their diagnosis? When did the smallest accomplishment become a resting point for success?

I don’t expect that Benjamin will overcome his disability but I do believe that by constantly challenging him and offering him opportunities that he will become more of himself. Development, no matter on what level, is the epitome of the human spirit; we grow, we change, we evolve. It drives me absolutely insane and sometimes to tears when I see other parents accepting that their child is exactly what they’ll be right now; when parents refuse to believe that their child can be so much more.

Surprising? HA! I doubt that – to read that I challenge yet another word associated with Ben’s diagnosis and life journey. This challenge isn’t like my internally brewing frustration for the use of “retarded” but instead a question of why a word is used when referring to my son (or your son or you daughter).

The word is SEVERELY

to an undesirably great or intense degree. “our business has been severely affected by the slowdown”

strictly or harshly. “the culprits will be severely punished”

Most of those words do not apply to Ben’s condition.

Undesirable presents as choice. He condition is undesirable? Well duh. Can we change it? Nope.

Strictly or harshly? Strictly implies structure. HA.

Harshly. Not at all. Neither life nor condition are harsh for Ben. Maybe on the rest of us but we’re not talking about “us” – it’s about Ben.

Ever wished you could do something to show you care about rare? To spread awareness and provide opportunities for education? Today is that day! And it’s ridiculously easy!

Wear BLUE JEANS! When someone tells you how hot you look – tell them why you’re wearing them.
Because you know someone living with a rare disease.

When someone else is wearing blue jeans, ask them if they care about rare?
If they don’t know what you’re talking about – let them know that just by wearing jeans on February 28th, they too can spread awareness.

Whether you know someone affected by a rare disease or know someone through a grapevine of connections or read an interesting blog on an individual – it’s all the same.
It’s about spreading the word.
We all have blue jeans.
We all wear them.
So why not promote a great cause at the same time?

BLUE JEANS FOR RARE GENES!

I love to see the pictures of everyone celebrating today – please find me on Instagram @k_haller and tag me or on FB!

I appreciate everyone’s support in showing the world just how beautiful rare is!

If you’re a parent who gets overwhelmed and/or frustrated and/or annoyed and/or outright furious about typical development questions that do not apply to children like my Ben…. yet are expected to be completed – read this.

My parents are right (how annoying!) – I only post when something is going wrong or has changed for the worst for Ben.

When Ben learns something new or improves a skill, we celebrate it but for some reason I don’t describe here how wonderful it is. Instead I leave this page for the downward turns and spirals that impact his day to day.

Ben’s seizures are changing. This is not uncommon for anyone who has any kind of seizure disorder and there are many factors that can contribute to it. Growth, general deveopment, age, health, neurlogical changes (and those are just the ones I’m aware of).

It’s scary though. Ben has been “stable” for nearly two years. His health has been moderately well since our foot fiasco in May 2013 and we feel like we have a pretty good hold on how to address his health. We haven’t been to seen his doctor since October; unheard of. We usually have a standing appointment – monthly, sometimes bi-weekly, sometimes weekly depending on what’s going on.

It’s hard to allow myself and justify being upset because days like yesterday are expected but that’s my baby. He is my six year old baby and he has the abilitiy to break my heart and affect me like no one else. I constantly worry for him but use that worry as means to push on through and as a force to ensurethat his quality of life is amazing.
The rational parent in me accepts that consistency is unattainable in the life of someone so medically fragile as Ben is. But the optimist in me knows how strong he is and that he kicks major ass considering what he’s been dealt with.

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How to Read my Blog

If you're looking at this blog for the first time and wondering what it is all about - find the first post and go from there.
I have included every note I have written about Ben (starting June 2009) which will give readers a full background on how we got to this point.